What We Do

Our Charity was set up in February 2016 after a small group of passionate parents wanted to make a difference to the way support was available to other families of children with Congenital Hyperinsulinism.

 Our Charity aims:

1. Support Families – Support Group, Fun Days, Events, and Conferences.
2. Support Research – Members of policy working groups.
3. Raise Awareness – Provide resources and education on Hyperinsulinism.
4. Advocate for Families – calling for better treatments, outcomes, and CGM funding.
5. End Misdiagnosis and Late Diagnosis – calling for better detection and newborn screening. 

We Support families through our Facebook Support Group, Family Fun Days, and Family Conferences. We bring families together so they can form life-long friendships and be part of a strong support network.

What we are working on:

• Continuous Glucose Monitoring – the call for CGM funding – exciting news we have successfully secured some funding and will continue to call for CGM access for all.
• We have partnered with Cambridge Rare Disease Network CamRARE to offer ‘This is Me’ patient passports
• Website Update – New website resources – developing self advocacy skills, addressing wellbeing, post 16 options and more!
• Tailored Resources – designed to meet different ages and needs.
• Teacher Training and Education Days – details coming soon!
• Cambridge Rare Disease Research Network – Patient led Research – details soon.
• Genomics England – Hyperinsulinism Newborn Screening
• Medscape Education and Awareness Programme.
• Pursuing families requests for improved screening for neurological consequences and hearing, vision, dental checks. Following our what HI Families want from medical professionals survey
• Working with HI Specialist Teams and medical professionals
• Networking
• Family Meet Ups, Conferences, Fun Days – Young Adult Meet Ups
• Supporting families in Scotland, Northern Ireland, and Ireland – new initiatives coming soon
• Reaching new communities

For the latest updates on our current projects visit our research and advocacy page:

 https://hyperinsulinism.co.uk/research-projects-and-advocacy/

Contact us: 

enquiries@hyperinsulinism.co.uk

Support Group: https://www.facebook.com/groups/CHCharityUK/

For ways you can become involved or support us go to: https://hyperinsulinism.co.uk/how-you-can-help/volunteer/

The Children’s Hyperinsulinism Charity is run entirely by volunteer trustees and relies completely on charitable support to gain funds to help us achieve our goals of helping families and supporting research.

The Children’s Hyperinsulinism is registered with The Charity Commission England and Wales registration number is 1165562 

To find out more: https://register-of-charities.charitycommission.gov.uk/charity-details/?regid=1165562&subid=0

Policies: For a copy of our policies or any other queries please email enquiries@hyperinsulinism.co.uk